“On February 1st 2014 – Noah turned TWELVE YEARS OLD……..”
Noah Stoffel, Mosaic Trisomy 16, 2/1/2001, Bremerton, WA
Our story started after I had my oldest son. He had been a twin, I lost the twin early on and I wanted another child right away so he had someone close in age. Things didn’t work out like I hoped. 5 years and 4 (more) miscarriages later … and I finally got pregnant with a baby that stuck.
It was very clear, early on, that even though this baby was growing and the pregnancy was continuing – that something was wrong. Every ultrasound that we got, the due date got pushed further away based on size, so the baby was not growing well at all.
Based on this, and the triple screen blood test (AFP) coming back with a double positive for Spina Bifida and Downs. A 1:165 chance for Downs Syndrome and a 1:98 chance for Spina Bifida – how it could come back with both, I don’t know, but it did. It was immediately suggested that we get an amnio, so we did. It came back and the doctor pulled us into room and he began by saying it wasn’t Downs or SB .. but something much rarer called Trisomy 16 Mosaic. Everything fell on deaf ears from that point on, other than “Oh, by the way, it’s a boy.”
He had a name from that point on. Noah Alexander, we wanted him to have a strong name. We were sent to genetics team, and was told there was no hope. “The fetus will die in utero … if it does make it, it will die shortly after, and if by some MIRACLE it makes it, it will be so mentally and physically delayed, it won’t be worth it.” Meanwhile, Noah was thrashing around inside me … saying, “hey I’m here, don’t listen to them” …. and then the DR said the worst thing. He said “I highly suggest that you interrupt the pregnancy.” And I thought – I’m only 19 weeks, he wouldn’t make it……….. and then it dawned on me, he was suggesting that I kill the baby I fought so hard for. I told him, “that’s not an option.”
It may have been selfish on my part, but I wanted to have him alive, I wanted to be able to hold him ALIVE if that’s all I was going to be given with him, time wise. I just needed to hold him once… breathing. Over all – I wanted to give him a chance, what would happen if the doctors were wrong? What happened if I killed my child, and he wouldn’t be all these things the DRs said – what if he was more like that handful of cases I had read about? Plus, I wouldn’t be able to do it.
So we went through our pregnancy, and at 33 weeks I developed Eclampsia. Noah was having heart deceleration, and a lot more was going on against us. I was transferred to a hospital with a better NICU and once there it was determined that the placenta was failing. It was small, abnormal and poorly functioning. We later found out that it was 100% Trisomy 16. But it was time to get this baby out.
I had an emergency c-section and the room was completely silent. There was NOTHING. Then all of a sudden, they started saying “3:45” … they kept repeating it. I finally asked – and was told it was the time my baby had been born. I hadn’t gotten to see him, there was no announcement … no “It’s a boy” nothing… just silence. They whisked him away into another room – to die. That’s what they had been told would happen. I wasn’t even given a chance to see him. This was very traumatizing or me.
He was born 1lb 12oz and 13 3/4 inches long ….
I found out years later – all the staff had been told by the Genetics team – that he would die and not to give us any hope. That there was no question he would be gone by 48 hours old.
But they were wrong.